Today, May 18 at sunrise, in St. John’s NL was the planned departure for my Outrun Rare 2020 TransCanadian speed record attempt. Running west, 105 kilometers everyday until I hit the Pacific ocean in Victoria, BC 67 days later.

This was going to be the largest rare disease awareness campaign in Canadian history to drive access, support, and research that people like my son so desperately need and deserve. It was supposed to be the accumulation of my entire athletic career, everything I worked for – blood, sweat, and tears but I write this from my home in Okotoks, Alberta where I remain quarantined with my family, riding out this bizarre storm called COVID-19.

This morning, I sat quietly in my backyard watching the sunrise with painful memories of July 2018. After halting my TransCanadian run in Manitoba due to a back injury, I remember so vividly laying quietly with my rare son Sam and apologizing to him that I couldn’t do it, that I couldn’t run the distance for him. The hurt and disappointment came flooding back this morning as I choked back the tears. Now, I know I had no hand in this run being cancelled, it was no one’s fault but rather an act of God that brought the world to its knees but it hurts nonetheless.

The problem is two things. First, as an athlete I am obsessed with my goals, I feel the thirst for achievement in every living cell in my aching body. Like a dog with a bone, I cannot stop until I devour it. I’ll snarl, claw, and bite my way through whatever gets in my way. The second – the love I have for I my son is limitless. There is no distance I wouldn’t go for him. Since getting Sam’s rare disease diagnosis 3 years ago I have felt helpless as a father, wanting to help but not knowing where and how. I somehow feel that this act is my best contribution to better support our Rare family and others like us.

I’ve been described as a grizzly bear, you never get between a grizzly and its prey and heaven help you if you ever threaten its young.

So I sit hear, cold and motionless, stripped of my control to help Sam with fresh legs fine tuned like a race car ready to go tare up the TransCanada highway.

The world has been forced to pause and I must do the same. So I sit looking at the sunrise in pause knowing that in June of 2021 I get to press play. I get another year to sharpen my knife for that one chance to find excellence in ultra marathoning and finally unlock doors for my son that have been shut all his life.

I am also eternally grateful that my family has not been affected by COVID-19 and that others in my community are taking the necessary steps to assure the health and safety of our most vulnerable like my son. Our government, industry, medical system and social constructs have been nothing but excellent and I have never been prouder than now to call myself Canadian.

The sun has now rose and there is nothing to do but pivot and look ahead. In 2021, we will be fitter, more effective, louder, and more prepared. Outrun Rare will act as an independent awareness and advocacy vehicle in order to finally bend the needle and give Canadian families with rare disease the access and support they so deserve. Outrun Rare has parted ways from the Rare Disease Foundation allowing our incredible team to support the entire rare disease community coast to coast providing the largest of stages so they can finally have their massage heard by all.

We started as a grassroots initiative and that is where we are returning. Just a dad with limitless love for his son.

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